Category Archives: NETwalkers Alliance

Five years: Building resources–Part 6

awareness, Boston Marathon Jimmy Fund Walk, Fundraising, Goals, Marketing NETs, NETwalkers Alliance

Hammering the awareness nail

NET  cancer patients across the world have worked for years to grow awareness of the disease among both doctors and the general population. I was reminded of that by a thank you letter I received this morning for a donation I personally made to the Carcinoid Cancer Foundation last month. They’ve been hammering away at that message for nearly 50 years.

This cannot be about redividing the pie…

I’ve been hammering at it for just five–and I’m about as frustrated by it as anyone can imagine. There has been progress–but not enough. The problem is worse than the popular slogan among patients and foundations: “If you don’t suspect it, you can’t detect it.” The truth is, you can’t suspect something you’ve never heard of–and for too many practicing physicians, that ignorance remains a big piece of the problem.

Awareness limits and builds resources

But lack of awareness, which I tried to address in my last post, doesn’t just have an impact on diagnosing the disease; it also has an effect on our ability to put the pieces together to find a cure. Scientists can’t study something they don’t know exists; people won’t donate money to a cause they have no knowledge of. And even if researchers know about a problem, they can’t do much if there is no money available to fund the research.

…ignorance remains a big piece of the problem.

I can’t speak for other patients and caregivers, but part of me would rather not have known what was really wrong with Jane, given we had no cure for what ailed her. Had she simply died following surgery after a diagnosis of idiopathic right-side heart valve disease, it might have made both our lives much more simple. There is nothing emotionally good that happens when you are told there is no cure for your disease, at least that’s how part of me feels about it.

Limited resources, limited ability

And five years after Jane’s death that is–in most cases–still the reality. We have more ways to slow the progression of the disease, we have more ways to ease its symptoms, but a cure remains elusive. And that, in part, has to do with lack of resources. Because we don’t have the money to pursue multiple avenues at once, we have to choose from among a number of good ideas which one to back–and if we choose the wrong one, there really is no evolving Plan B.

…part of me would rather not have known…

For example, in the summer of 2011, I made a trip to Dana-Farber to tour the lab where they were doing research on NET cancer. They had set up a slide with a NET cancer tumor they had managed to grow in the lab. As I looked at it through the microscope they told me about the tiny cells connected to the main body of the tumor. They explained these were feeder cells–so-called because if you didn’t leave them attached to the newly harvested tumors, the tumors would not grow in the lab.

What we do without

Had we had money to fund the research at the time, we might have explored more quickly what was going on with those feeder cells–more properly called stromal cells. But the pittance we had for pure science was already committed to DNA research on the main body of the tumor. Looking at those cells had to wait.

…a cure remains elusive.

It shouldn’t have had to–any more than any of a dozen other ideas shouldn’t have had to. But when you have not merely limited, but practically no resources to work with, you have to make choices about where your money goes. Like a poor family, you look for where you think you can get the most bang for your buck based on the limited money and knowledge you have. Sometimes, you get lucky; many times you don’t.

The price of limited resources

But for NET cancer researchers, that is the reality. It is a reality that likely has cost more than a few lives–and will continue to cost lives if we don’t find ways to change it–and change it significantly.

Looking at those cells had to wait.

Walking with Jane has not been hugely successful in raising large sums of money. Over the last five years, through teams we’ve organized and donations I’ve personally made, we’ve generated nearly $350,000–most of which went to NET cancer research. (We also sponsor scholarships at the high school where Jane and I worked and at her alma mater, and have a successful Relay for Life team whose money goes to support American Cancer Society programs.)

Every dollar counts

That seems like a goodly sum–and given our size and resources, it is–but compared with what it costs to fund even a small Phase I trial, it isn’t very much. And given the most conservative estimate of what it will cost to find a cure–about $100 million–it isn’t much money at all.

…that is the reality.

But, as I say to potential donors everywhere, given how little we actually spend on NET cancer a year, every dollar counts. For example, I am told my initial commitment to Dana-Farber meant we went from one full-time NET cancer doctor in the clinic to two. My annual commitment was quite small, comparatively.

Eventually, you’re talking real money

Our local fundraisers are tiny. The biggest local event Walking with Jane held last year only raised about $3200. But we did ten of them. And those events inspired people around New England to hold events of their own–leading to $67,800 being raised by the NETwalkers Alliance team for NET cancer research at DFCI through the Jimmy Fund Walk.

…every dollar counts.

In 2016, Walking with Jane will add two more events to its local list and focus nearly our full effort on NET cancer research. That means we will cut back on our commitment to the Relay for Life so that we can devote more time to what really is our reason for being: Finding a cure for NET cancer–and doing it sooner rather than later.

Offering knowledge

We will also offer our fundraising expertise to other members NETwalkers Alliance as well as other teams committed to NET cancer so that we continue to grow the pool of money available for research. And if someone asks us for help outside the New England area, we’ll do that, too. We see a lot of what we have done as piloting ideas we hope others will want to adopt.

Our local fundraisers are tiny.

For now, the majority of our direct fundraising efforts will be directed at DFCI. However, we want to help other cancer centers with NET cancer programs develop more and better local fundraising programs of their own. We can best do that by sharing knowledge of things we have done while continuing to grow our own local capabilities.

Helping NET cancer centers grow

We don’t want to take away from what organizations with national and international reach are doing. Rather, we want to supplement their efforts by helping more regional organizations become better at supporting local NET cancer centers that are really hurting financially. We need to grow those centers so that they do not see reductions in their budgets. One way to do that is to create robust, local groups that can create greater local support–both financially and vocally.

…we continue to grow the pool of money available…

We want our work with 3-in-3: The Campaign to Cure NET Cancer not only to build resources for NET cancer research at DFCI, but also serve as a national–and international–model other NET cancer centers and their supporters can use to further increase funding, awareness and support for NET cancer researchers, patients, and caregivers. If we can inspire even five similar efforts at other cancer centers, that could lead to a substantial increase in NET cancer spending in the US and elsewhere.

Growing the resources pie

But we need to do that by attracting new money. We don’t want to see declines in support for NET cancer research elsewhere as support for these programs increases. Nor do we want to see declines in spending for other cancers. This cannot be about redividing the pie that is already too small–it needs to be about growing the size of the pie. To do that, we need to work together.

If we can inspire even five similar efforts…

A year ago, I made a series of proposals for marketing NET cancer. In the final post in this series, I’ll revisit those ideas and look at where they fit into the next year–and the next five years.

Dana Farber Cancer Institute Program in Neuroendocrine and Carcinoid Tumors chairman Matt Kulke, MD, Program director of clinical trials Jennifer Chan, MD, and Walking with Jane president Harry Proudfoot presented at the 3-in-3: Campaign to Cure NET Cancer kick-off event at the Dana-Farber Cancer Institute December 9, 2015. The aim of the campaign is to increase the resources available for NET cancer research at DFCI.
Dana Farber Cancer Institute Program in Neuroendocrine and Carcinoid Tumors chairman Matt Kulke, MD, Program director of clinical trials Jennifer Chan, MD, and Walking with Jane president Harry Proudfoot presented at the 3-in-3: The Campaign to Cure NET Cancer kick-off event at the Dana-Farber Cancer Institute December 9, 2015. The aim of the campaign is to increase the resources available for NET cancer research at DFCI.

 

NET cancer research needs you

Boston Marathon Jimmy Fund Walk, Carcinoid/NET News, Fundraising, Marketing NETs, NETwalkers Alliance

(Editor’s note: What follows is the letter I wrote this week inviting people to join the NETwalkers Alliance in the Boston Marathon Jimmy Fund Walk on September 25. All the money our team raises goes to NET cancer research. I post it here for two reasons: The first is in the hope that those of you in the Northeast will join us for the walk; the second is to provide a template for groups elsewhere to use in their own fundraising events. You are free to use this letter either as is or in modified form either for the Jimmy Fund Walk or a similar event in your area.) 

NET cancer team letter

Dear friends,

I’ll be in Hopkinton for the start of my sixth Jimmy Fund Marathon Walk in 283 days. I’ll walk, as I always have, in memory of my wife Jane, who died of NET cancer December 10, 2010. And I’ll walk to support NET cancer research at Dana-Farber in the hope that my many friends with NET cancer will benefit from their work.

I’m writing you today to ask you to walk all or part of that route with me September 25 as part of our NETwalkers Alliance team. I’ve punched in some significant goals for this year as we work to support 3-in-3: The Campaign to Cure NET Cancer, which we launched December 9. That campaign aims to raise $3 million in three years for NET cancer research at DFCI—and every NETwalkers Alliance dollar will go to help meet that ambitious goal.

If you’ve followed my posts on walkingwithjane.org this fall, you know just how deeply the loss of Jane affects me emotionally even today. And you know, as well, how determined I am to prevent others from going through what she suffered–and what I deal with now.

I’m already in. I hope you’ll join me.

Many of you have lost people you love to this disease—and none of you needs me to remind you of how that feels. You know intimately the things I try to put into words–and fail to do adequately.

Many of you have loved ones who are fighting this disease right now. You know the daily trials they face too well.

And many of you have this disease. You deal every day with the sometimes debilitating and embarrassing symptoms of NET cancer.

…take concrete steps to change the reality…

Each of us has a reason to do what we can to kill NET cancer. The Walk is one of the ways we can take concrete steps to change the reality for our loved ones and ourselves.

We’re looking to recruit 100 walkers for our team this year and raise $100,000. With your help, we can make that happen. More importantly, we can help change the future for NET cancer patients and their families.

I’m already in. I hope you’ll join me. Register today. If you enter the code word NEWYEAR before January 31, you’ll get a $10 registration discount.

Pax et lux,
Harry

p.s. If you were a Pacesetter last year, they tell me you’ve been sent a separate discount code word you can use.

p.p.s. Please feel free to share this note with others who may be interested in joining us. We need all the help we can get to help spread the word about NET cancer.

Anger and grief fuel my Walk for the Jimmy Fund every year. I do it to raise money for NET cancer research. But no matter what I do, it never feels like enough--and it never alleviates entirely either emotion for very long.
Anger and grief fuel my Walk for the Jimmy Fund every year. I do it to raise money for NET cancer research. But no matter what I do, it never feels like enough.

Five years: Building resources for NET–Part 3

Boston Marathon Jimmy Fund Walk, Fundraising, Goals, NETwalkers Alliance

Resources 2010

The day before Jane died–when we already knew there was nothing left to do but let her go–Jennifer Chan, Jane’s oncologist, and I had a conversation about Jane’s legacy as a patient. Jen told me that afternoon that what they had learned from her over the four months from Jane’s diagnosis to her death had doubled our knowledge of the disease. Two or three of the things the came out of that knowledge have made a substantial difference in the lives of other patients since.

…curing NET cancer now will become a reality.

But what stunned me that afternoon was I knew pretty much what we had learned–and it wasn’t very much. That statement demonstrated just how little we knew in 2010–and it didn’t take me very long to figure out why we knew so little about a form of cancer first diagnosed nearly 100 years before. Not many people had spent any serious time studying what we then called carcinoid cancer–and their efforts had been hampered by the tiny amount of money available to study the disease.

The search for resources

In 2010, we spent less than $2 million on NET cancer research. The Dana-Farber Cancer Institute had one doctor working full-time on it. Jen was working on it only half the time. The rest of her day was spent on other gastrointestinal cancers. There wasn’t money to do much more than that.

…Jane’s legacy as a patient.

And that problem existed virtually everywhere else in the US. There were pockets that were doing more, but they were few and far between. $2 million just doesn’t buy many researchers or much lab space or much equipment. People were dying as a result–but they were dying quietly and no one was paying much attention.

Increasing resources then

Jane, too, died quietly–but I was determined to make some noise about it, if I could just figure out how to do it. And a chunk of that noise was aimed at creating the resources we needed to make a difference in the lives of NET cancer patients. Raising awareness was one step in that process–but setting an example on the financial side needed to be part of the equation.

People were dying as a result…

So in June of 2011 I signed up to do the Jimmy Fund Marathon Walk. In July, someone I met at the Caring for Carcinoid Foundation (now the NET Research Foundation) told me about their team and that because they raised over $10,000 they could earmark that money specifically for NET cancer. I joined that team immediately.

Building resources

I had no idea what I was doing. I’d never tried to raise money before I’d started doing fundraisers for our Relay for Life teams that spring. We’d managed to raise barely $2500 in the six months between Jane’s death and those events–and it had been exhausting. Now I was going to try to raise money on my own for an event that would take place a good way from where my fundraising base was.

…I was determined to make some noise…

So I set my goal for the minimum–$300 seemed like an awful lot of money to me then–and posted that I was walking the Marathon in September on my brand new Facebook page. In less than an hour, I’d garnered $500 in donations. I reset my goal to $1000, then $1500, then $2000.

The long Walk to resources

Things eventually slowed down, but when the dust had settled, I’d raised about $4500 in less than three months. I raised $10,000 in 2012, $13,000 in 2013, over $15,000 in 2014, and broke $30,000 in 2015. I had lots of help last year as our Relay team turned its full attention to NET cancer after the Relay in June.

I had no idea what I was doing.

In 2012, I took over as captain of the Caring for Carcinoid Team, changing its name to include Walking with Jane–yes, I have an ego. The size of the team shrank–as did what the team raised. In 2013, we were even smaller when three of our team members–and our best recruiter–lost their father to NETs in June. But we raised more money. In 2014, we added another team to ours and grew our own team beyond that. That group raised over $66,000, And while we had a smaller team in 2015, we narrowly beat that number.

Committing personal resources

But in the fall of 2011, I had quietly made another decision. I discovered that Jane’s small pension was coming to me–and it didn’t seem right for me to keep that money for myself. Certainly, I know I will likely need that money someday and that I should be salting it away in the meantime. But it seemed a better investment to put that money where it could do more immediate good.

The size of the team shrank…

So I pledged $100,000 over five years to set up the Walking with Jane Fund for Neuroendocrine and Carcinoid Tumors at the Dana-Farber Cancer Institute. Last month, I renewed that pledge for another five years. It isn’t a lot of money compared with the major donations of folks like the Yawkeys and people who get their names carved on the walls–but that isn’t the point. I look at that donation as seed money that I hope will get others to do what they can–whether less or more than that donation. Every dollar counts.

Creating the resources we need

Because the fact remains that we still don’t have the resources to really go after NET cancer the way we can go after lung cancer or breast cancer or prostate cancer or colon cancer. Last year, with luck, the total raised and spent in the US on NET cancer will be $8-10 million–a great improvement over where we were in 2010, but still far from what it will take to find a cure. We’ll have more doctors, researchers and lab space dedicated to NET cancer than we ever have before, but still far from what it will take to find a cure.

…it seemed a better investment…

Last month, Dana-Farber’s Program in Neuroendocrine and Carcinoid Tumors launched 3-in-3: The Campaign to Cure NET Cancer. The plan is to raise $3 million in three years for NET cancer research at DFCI. I gave the welcoming speech and closed the meeting with a call to create the resources to cure this foul fiend of a disease. (All the money raised by both our Walk team and the Walking with Jane Fund will count toward this campaign.)

Building on our resources

As of this afternoon, we have raised $425,000 in less than a month for 3-in-3. But we need to keep that momentum going. More, we need to extend this idea to other NCI cancer centers with NET cancer programs and other NET cancer foundations so that over the next three years we raise nationally $45-60 million so that we can fully exploit all the new knowledge about NET cancer researchers are generating.

I gave the welcoming speech…

In 2011, Walking with Jane raised about $7000 for cancer research–including what we raised for Relay for Life. My goal, at the end of that year, was to double that amount in 2012, double that again in 2013, 2014 and 2015. By that measure, we should have raised $102,000 this year. That amount did not pass through our bank account this year.

The doubling cube of resources

But when I add up what our Relay team raised and what our Jimmy Fund Walk team raised, and what I personally donated to DFCI and the other major NET cancer foundations, we came very close to that mark.

…we should have raised $102,000 this year.

My goal in doing that was to encourage similar increases in resources in other groups over that same time period. I doubt Walking with Jane had much to do with the fact NET cancer organizations raise four times what we did in 2010 today. Walking with Jane simply does not have that kind of reach or influence. Many of us arrived at the same goal, seemingly independently, and took steps to make that happen. And we seem to have done so entirely with new resources–so we are not taking money from other cancers to cure our own.

Critical mass

And the events of December 9 at Dana-Farber convince me we are nearing the critical mass to make #cureNETcancernow more than a simple hashtag for a fundraising campaign; we are nearing the point that curing NET cancer now can become a reality.

…we came very close to that mark.

You can help make it so.

Walking with Jane president Harry Proudfoot cited his wife Jane as a warrior against ignorance both as a teacher and as a NET cancer patient in a speech at the Dana-Farber Cancer Institute, December 9, 2015. He ended with a call to increase NET cancer resources.
Walking with Jane president Harry Proudfoot cited his wife Jane as a warrior against ignorance both as a teacher and as a NET cancer patient in a speech at the Dana-Farber Cancer Institute, December 9, 2015. He ended with a call to increase NET cancer resources.

Editor’s note: This is the third in a series of pieces about where we have journeyed over the last five years–and plan to go over the next five. The next part in the series will look at goals for the next five years–and plans for how to reach those goals. 

 

Warrior song: The 3-in-3 campaign at DFCI

Fundraising, Goals, Grief, Jane, NETwalkers Alliance

(Editor’s note: This is the text of the speech I gave December 9 at the Dana-Farber Cancer Institute as part of the kick-off for 3-in-3: The Campaign to Cure NET Cancer. The subheads were not included in the speech. They are used here as graphic devices to break up the page.)

Introduction of the night’s program 

My name is Harry Proudfoot. I am the founder and president of Walking with Jane and a member of the Visiting Committee for Gastrointestinal Cancers here at Dana-Farber.

I want to welcome all of you to this kick-off of 3-in-3:The Campaign to Cure NET Cancer—a campaign we hope will be a real game-changer for all of you here—and for all NET cancer patients and their families everywhere.

…I dream of the day…

Later in the program, we will hear from Dr. Matt Kulke, the head of the Program in Neuroendocrine and Carcinoid Tumors and Dr. Jennifer Chan, who is the clinical trials director for the program. They will talk about the science and the concrete goals our support makes possible.

Jane’s story

But tonight is a truly bittersweet moment for me. Five years ago tonight I was in a hospital room with my wife. She’d gone into a coma about 10 that morning—a coma induced by her fourth and final carcinoid crisis following surgery to replace the valves in the right side of her heart that her cancer had destroyed.

…a real game-changer…

Just before 6 p.m., Jane regained consciousness for a few minutes. I had to tell her there was nothing more her doctors could do—that we were taking her off the machines that were helping her breathe, taking out the feeding tube, and shutting down her pacemaker so that she could finally die.
 “You’re going home to the garden,” I told her. She closed her eyes and I kissed her forehead. “Good night, my warrior princess,” I said. That’s the last thing I know she heard me say. I read to her, I sang to her, I talked to her, and I held her hand—but how much she was aware of after that….

The warrior princess

Jane was a warrior against ignorance all her life. She taught science—as I taught English—in a school that educated the working class children of a small town. We stayed there because we believed they deserved as good an education as anyone else got.

…she could finally die.

And when Jane was diagnosed with NET cancer, she became a warrior against it. She was determined to be the first person to beat it, but she was equally determined to end our ignorance of the disease and how it worked. She faced her life and her death with a singular kind of courage.
She died just before 8 p.m the next night. There was a slight catch in her breath—and she was gone.

Warrior days

Two days after we buried her, I went back to work. I was a teacher—and my students needed me. But Jane and I had decided well before she was diagnosed that we would retire from teaching that June—and I kept that promise.

There was a slight catch in her breath…

But I had made another promise—that if she killed her advanced disease the only way anyone ever had—by dying and taking it with her—that the battle against it would not end for me until it was dead.
I went to Seattle to be with my family that Christmas. On the plane out, I drafted my first NET cancer pamphlet. On the plane home, I drafted my plan for attacking the funding and awareness issues that had made Jane’s death inevitable—and that still plague our efforts today.

Warrior work

On the night of what should have been our retirement dinner, I spoke at the local Relay for Life and walked through the night in Jane’s memory.

But I had made another promise…

That fall, I walked the length of the Boston Marathon course for the first time. I raised nearly $5,000 for NET cancer research—far more than I expected. In December, I pledged $100,000 over five years to support the small but growing program at DFCI. Tonight, I make the final payment on that pledge—and renew that pledge for the next five years.
 But I don’t just put my money where my mouth is—I put my labor there as well. I’ve captained four Jimmy Fund Walk teams that have raised an additional $175,000 over the last four years. I’ve put together pamphlets, a website for Walking with Jane that averages nearly 2000 visits a month, and served the NET cancer community in every way I’ve been able to think of—including asking everyone I know for money.

The dream

I do that in the hope that my friend Jillian will see her two four-year-old sons graduate from college and dandle their grandchildren on her knee. I do that in the hope my friend Andrew will have the same experience with his pre-teen daughter. I do that so my friend Kara can dance at her teenage son’s children’s weddings.

…I don’t just put my money where my mouth is…

And I dream of the day I can stand at Jane’s grave and say, “It’s over—it’s dead. No one ever has to go through what you did for 30 years—the insomnia, the stomach pain, the bloating, the diarrhea—NET cancer is well and truly dead—and we played our part.”
I truly hope you will all join with me in making those dreams a reality.
Thank you.
Walking with Jane president Harry Proudfoot cited his wife Jane as a warrior against ignorance both as a teacher and as a NET cancer patient.
Walking with Jane president Harry Proudfoot cited his wife Jane as a warrior against ignorance both as a teacher and as a NET cancer patient in a speech at the Dana-Farber Cancer Institute, December 9, 2015.

Introduction of Jennifer Chan, MD

Now, it is my honor to introduce Jane’s oncologist, the director of clinical trials for the Program in Neuroendocrine and Carcinoid Tumors, Jennifer Chan, who holds a very special place in my heart.
I can’t speak to Jen’s feelings when she first met Jane. But for Jane, it was as though she were meeting her sister. Jane was a very private person. It took me years to get where Jen was after two minutes.
But Jen is a very special kind of person. Jane was exhausted that night. We were in bed reading at 8:45. Then the phone rang. It was not a telemarketer—it was Jen—and she had a plan.
When Jane was in the hospital, Jen spent part of her lunch break with us seemingly every day. On Thanksgiving, she put the turkey in the oven and came to see us.
And on the last day of Jane’s life, she sat with us—both during her lunch and before she left for the day. She said she saw patients in clinic that day, but her heart was in the room with Jane—and with me.
I could tell you about Jen’s background, her colleges, degrees and accomplishments—but the most important thing I can tell you is she is wonderful, intelligent and creative human being who brings love and passion to whatever she does.
Ladies and gentlemen, my very dear and very good friend, Dr. Jennifer Chan.
(Editor’s note: Please help spread the word on this campaign by sharing this speech and the press release that will follow shortly. When the slides from Jen and Matt’s presentations become available, I will pass those along as well. Contribute to 3-in-3: The Campaign to Cure NET Cancer.)

Matters that build NET hope

Carcinoid/NET News, NET Cancer Awareness Day/Month, NETwalkers Alliance, Treatments, Uncategorized

Is the tide turning?

Dr. Matthew Kulke, who heads the Program in Neuroendocrine and Carcinoid Tumors at the Dana-Farber Cancer Institute, calls 2010-11 a watershed moment in NET cancer. Results on the trials of Everolimus and Sunitinib were released, leading to their approval by the FDA for pancreatic NETs; trials were gearing up in the US for PRRT, the radiation treatment long in use in Europe for alleviating NET cancer symptoms, but about which questions remained in the US; the first cell lines for NETs were in development both in vitro and in vivo.

…every day brings a greater understanding…

If 2010-11 was a watershed moment in NET cancer history, 2015-16 may prove a true turning of the tide moment. The announcements and events of the last few months create new hope for every NET cancer patient. They range from substantial new research grants to significant drug trial results to a potentially entirely new understanding of how neuroendocrine tumors grow and develop.

Five years of growing change

When Jane was diagnosed in August of 2010, I read everything I could find on the topic. A Google search turned up barely a page of references–and some of those were duplicates. The day before Jane died, her doctor told me Jane’s case alone had doubled our knowledge of the disease. We spent about as much on treating Jane over those four months as was spent on research in the US for that entire year.

…a true turning of the tide…

Last month, more than 25 presentations were made at ECCO in Vienna on NET cancer–including a pair of featured presentations. We will spend more than four times as much money on research into NET cancer in the US this year as we spent in 2010. There is reason to hope.

Funding matters

In September, the NET cancer group at Iowa University received a SPORE Grant from NIH to study the “genetic and molecular composition” of neuroendocrine tumors with an eye toward developing new diagnostic techniques and treatment of the disease.

There is reason to hope.

The Caring for Carcinoid Foundation, which just changed its name to the NET Research Foundation, has funded a Phase I/II trial of an immunotherapy regimen at Stanford aimed at NET cancer that began this spring. Other groups are working to increase private funding of other NET research at cancer institutes across the country, though many of those plans are not yet public. For example, Caring for Carcinoid’s Pan Mass Challenge bike team and the Jimmy Fund’s NETwalkers Alliance Marathon Walk team combined to raise over $220,000 for NET cancer research at the Dana-Farber Cancer Institute this year.

Treatment matters

Results of the international PRRT trials, which included a number of US sites, were released at ECCO last month and could lead to FDA approval of that technique within the next year. Among the findings was a method of determining who the therapy would work well on.

…working to increase private funding…

Meanwhile, everolimus, already approved for pancreatic NETs, moved closer to FDA approval for gastrointestinal NETs as a result of the RADIANT-4 Phase III trials; telotristat etiprate, as reported here and in August, also will likely win FDA approval next year based on its recently completed TELESTAR trial.

Future matters

And these are just the highlights of the last few months. There are whispers of even bigger things on the near-horizon. Nothing looks like a cure yet–but every day brings a greater understanding of the disease and how it works, as well as new ideas for treatments that will not merely extend patients’ lives, but improve the quality of those lives as well.

…could lead to FDA approval of that technique…

We’ll look at all of these things–and much more–in more detail during the November 10 Walking with Jane Social Mediathon, which I am trying to get ready for. Stay tuned.

There are lots of different hands working on NET cancer issues--and we are beginning to see an increase in knowledge as a result.
There are lots of different hands working on NET cancer issues–and we are beginning to see an increase in knowledge as a result.

 

Thoughts before the Walk

Boston Marathon Jimmy Fund Walk, Death, Fundraising, Grief, Jane, NETwalkers Alliance, Uncategorized

The walk I’m supposed to be doing

I’m supposed to be retired. I’m supposed to be sitting on my deck, looking out over my finely manicured landscape design. I’m supposed to be relaxing and traveling to exotic spots. I’m supposed to be doing all of those things with Jane by my side.

…I know I have to try.

Five years ago this fall, all of that changed. Jane was diagnosed over the summer with NET cancer. In early September, we learned it had damaged the valves in her heart. In late September, we knew we were in a race between her cancer and her heart–a race we needed to win if we were to enjoy even a few months of retirement together.

The cost of failure

By Christmas, it was over–and I was alone. Sometimes, I try to explain what that means to people who have not experienced it. People tell me I am good with words–and maybe I am. But I have not yet found anything that even begins to convey the emptiness that loss creates. My father’s words come closest: “And now you know there is nothing anyone can say to you that will make this feel any better.”

…with Jane by my side.

Someone told me last week that if we had even one child, this would be easier to bear. My father had six of us when my mother died. I don’t think it helped much, even when his eldest son was equally a widower. The relationship between spouses is different from what exists between brothers or sisters or children or parents. Our spouse is the person we choose to be our family. It is the only family relationship we make a conscious choice to have.

Why keep going?

Someone else asked me this week why I take on so much–why I can’t just let this be someone else’s problem. And I have to admit there are moments I just want to walk away from all of it. Nothing I do will bring Jane back. Nothing I do will truly avenge her death. Nothing I do will make this emptiness I feel any better.

…I was alone.

But then I think of the people who walk today because, in part, of what we learned from Jane. I think of the doctors and nurses and researchers Jane’s life–and final days–inspired. I think of the literally hundreds of people I know who are fighting the same cancer Jane had.

I walk because I know…

And I think of their children and their husbands and wives and parents. I know how it feels to look across the kitchen table and see no one there, what it’s like to wake up in the night to half the bed being empty, what it’s like to see something and have no one to share it with–and I know I would condemn no one to those things.

Nothing I do will bring Jane back.

Jane’s death set me on this path–but it is not what keeps me there. Jillian and Andrew and Amanda and Ronnie and their spouses and children do. Pamela and Kelly and Josh and Alicia and all their loved ones do. And Jen and Matt and Eric and Emily and George–and all the doctors and researchers working on this difficult cancer–do.

Choosing to ignore limitations

In the end, I know I won’t find the cure for NET cancer. I know I’m not rich enough or well-connected enough to come up with the money that will find that cure. But I also know that if I don’t do all that I can I won’t be able to live with myself.

I know how it feels…

I know how to write. I know how to speak. I know how to walk. Doing those three things, perhaps I can inspire the people who have the money; perhaps I can inspire the people who have the knowledge and the skills; perhaps that will be enough. And perhaps not. But I know I have to try.

You come, too.

Each year, I cry "Victory" as I finish the Marathon Walk. But the real victory will only come when we can cure NET cancer in all its forms.
Each year, I cry, “Victory” as I finish the Marathon Walk. But the real victory will only come when we can cure NET cancer in all its forms.

Killing NET, one step at a time

Boston Marathon Jimmy Fund Walk, Fundraising, Goals, Marketing NETs, NETwalkers Alliance, Uncategorized

A word about this post

One of the things I said I would do last winter when I was writing about goals and planning was I would share the letters I write for fundraising with the NET cancer community in the hope those letters would help other groups besides Walking with Jane raise money to help their regional NET cancer programs.

What follows is my summer fundraising letter. By modifying one paragraph and the link in the last paragraph, you can use it with your NET cancer fundraising efforts. You have my permission to do so, as long as you use it for that purpose.  I have avoided using headers and the like to make the job of using it as easy as possible.

The Letter

Dear friend,

Jane’s death haunts me. I still wake up in the middle of the night, reaching for her and finding nothing there but a pillow. I still hear the words her doctor said the day she was diagnosed. I still hear the hospitalist telling me there was nothing more to be done.
 
I still remember telling her we were letting her die because there was nothing left to try 
 
Ten thousand people were diagnosed with NET cancer in the US the year my wife was diagnosed with that incurable and nasty form of the disease. Last year, 15,000 people got the same diagnosis. 
 
We don’t know why the numbers have shot up so dramatically in the last five years. Part of it may be more doctors are aware of the disease than was the case then. Part of it may be the new methods we have to detect it. Or maybe something else is going on. We just don’t know.
 
And while we have new treatments coming online to ease the symptoms of this rare form of cancer, we are not significantly closer to a cure than we were five years ago. Every new thing we learn about it seems to further complicate the situation. I increasingly appreciate the adage among NET cancer doctors: “When you’ve seen one case of carcinoid/NETs you’ve seen one case.” Too often, what we learn from one patient does not translate well to another.
 
But neither I nor the doctors and researchers are giving up. There are too many patients—120,000 of them—who desperately need a cure. They want to see their children grow up, see them graduate from high school, go to college, get married and present them with grandchildren. They want to grow old with their spouses and celebrate all those anniversaries Jane and I didn’t get.
 
So, once again this year, I will take on the 26.2 miles of the BAA Boston Marathon course on September 27 as part of the Jimmy Fund Walk. As always, every penny I raise will go to carcinoid/NETs research at the Dana-Farber Cancer Institute.
 
I’m not a scientist. I’m not a doctor. I’m not a researcher. I’m a man who lost his wife—a man who doesn’t want others to go through what my wife went through—the insomnia, the flushing, the constant, endless diarrhea that is the lot of too many NET cancer patients. And I don’t want anyone to go through what I went through then—or what I go through now.
 
We need your help. Please give what you can. Help us kill NET cancer before it kills someone you love.
 
Sincerely,
Harry Proudfoot
Chairman, Walking with Jane
 
p.s. Even if you can’t give, please share this with people you know.  

August NETwalkers Alliance Update

Boston Marathon Jimmy Fund Walk, Carcinoid/NET News, Fundraising, NETwalkers Alliance

The value of what we do

There is exciting news on the NET cancer front—and Dana-Farber is on the cutting edge of that news. Ten days ago, Lexicon Pharmaceuticals released some results of the TELESTAR Phase 3 of telotristat etiprate. The trials of that drug, run by Matt Kulke and Jen Chan, were successful to the point FDA  approval of the first new drug since 1999 for carcinoid syndrome seems likely sometime in 2016. You can read more about it at walkingwithjane.org/news.

My eyes are firmly on that prize.

The research that led to that drug doesn’t happen without the effort of people like us raising the unrestricted money to fund it. And without the role we play, the resources for the next big breakthrough may not be there.

Raising the stakes

Telotristat is not a cure for carcinoid syndrome—or for NET cancer. But it will mean a dramatic improvement in the quality of life for many patients. And it may help buy them time to take advantage of the next big thing when it comes.

There is exciting news on the NET cancer front…

But we need everyone to lace up their sneakers in the days ahead so that we can find a cure to this awful disease—and I don’t need to tell most of you how awful that disease is.

Reason to sign up today

We have just 45 days to go before Walk Sunday. So far, we have 19 people officially on the team. That’s just one-third of our goal for the Walk.

…we need everyone to lace up their sneakers…

Many of you have said you plan to sign up officially soon. If you sign up before tomorrow, August 14, at midnight, the Jimmy Fund will mail me your Walk T-shirt and I will deliver it to you, along with our team shirt for this year, before the Walk. Otherwise, you will have to stand in line on Walk Day to get the official shirt.

By the numbers

As of today, we have officially raised $17,020 against our goal of $80,000. I know of about another $9-10,000 that is not yet in the Jimmy Fund Walk’s coffers. I expect to raise another $3-7000 personally between now and then between a miniature golf tournament and my summer fundraising letter. And the next 45 days were huge a year ago for everyone, so I think we can get there.

…45 days to go…

But we can’t without your help.

Landers tournament boost

A good chunk of the money we are waiting on is from the very successful Hank Landers Memorial Golf Tournament Jenaleigh Landers and her family organized on August 1. I thoroughly embarrassed myself with my lack of golf ability—but also thoroughly enjoyed the day. Jenaleigh is still paying off the bills, but the basic estimate is well above last year, which was our biggest single day fundraiser of the year for 2014.

…I think we can get there.

Jenaleigh’s event is north of Boston. I’d love to see us get additional tournaments west and south of the city next year. Let me know if you have an interest in doing one.

Upcoming and ongoing

Jillian Emmons’ NORWEX fundraisers are also doing well. Contact her about them on our NETwalkers Alliance Facebook Page.

I’d love to see us get additional tournaments…

I’ll be doing a booth at a craft fair in Somerset, MA August 22. If you are a crafter and would like me to sell some of your work as a fundraiser for your Walk, let me know and I’ll come get it. I’m trying to set up to be at another craft fair over Labor Day weekend.

Speaking of speaking

If you are doing a fundraiser of any kind for the Walk, let me know. If you have a group you’d like me to talk to, let me know. If you’d like to try to get either Jen or Matt to a fundraising event you are doing, let me know. Getting the word out about NET cancer is as important as raising money.

I’ll be doing a booth at a craft fair…

You’ll notice I am already thinking in terms of what we can do a year from now. It’s increasingly clear I need to turn into a year-round fundraiser. Research is expensive.

The work we do

But more important is saving lives: giving patients better, longer lives with their spouses, children and grandchildren. Jane wasn’t here for our 25th wedding anniversary last year. Our 26th is September 2. I know how horrible that day will be for me. I know how horrible it was to watch her die.

Research is expensive.

We’re fighting so that others can have those anniversaries, birthdays and other milestones Jane and I will never have. My eyes are firmly on that prize. We need yours to be as well.
Pax et lux,
Harry
Help us smack down NET cancer. It's mid-August and Walk Day is just 45 days away.
Help us smack down NET cancer. It’s mid-August and Walk Day is just 45 days away.

July Marathon Walk Update

Boston Marathon Jimmy Fund Walk, Fundraising, Goals, Marketing NETs, NETwalkers Alliance

Patients are counting on us.

… we have 16 Walkers officially signed up…

We have a lot to do…

Bits and pieces

I’ll be working…

…help with your online fundraising letters and notes.

If a seventh grader can walk 13.1 miles and set an even bigger goal as an eighth grader, what's your excuse for not joining us?
If a seventh grader can walk 13.1 miles and set an even bigger goal as an eighth grader, what’s your excuse for not joining us?

June Fundraising Update

Boston Marathon Jimmy Fund Walk, Fundraising, Goals, NETwalkers Alliance, Uncategorized

June numbers

As I write this, the Jimmy Fund Marathon Walk is 90 days away. So far, we have 16 registered walkers and have raised $12,500. That’s a long way from the $80,000 public goal we’ve set for this year—and an even further distance from the $100,000 goal several of us have talked about.

…every month needs to have plenty of effort…

My own fundraising is still lagging a bit behind last year. I’d hoped to be closing in on $10,000 by this point. But things are picking up, as they generally do at this point in the year.

A big donation

Robert Phelan and I presented a check for $3000 from SafeCo Insurance to the NET cancer program at DFCI earlier this month. That is part of the total above.

…we have 16 registered walkers…

You never know who will do what until you ask. Just talking to my dentist and his assistant may have netted us another four walkers from that office.

Raising awareness–and money

Last week was the Greater Fall River Relay for Life. While it has no connection to the Walk, it is one of my training milestones each year. And this year we tried to raise the level of awareness about NET cancer to a higher level by creating a massive zebra herd made of luminaria bags. Total, we created about 1200 bags, one for every ten people who died of NET cancer last year.

You never know who will do what until you ask.

We raised a total, so far, of $7776 for the American Cancer Society through the Relay, including close to $1400 at the event from sales of buttons and our clam cake and chowder concession. We managed to keep people on the track for just about every minute of the 18 hours of the event. Two of us walked nearly non-stop from about 11 a.m. until 6:30 a.m. on the night shift. Overall, the Relay has raised more than $210,000 for patient support and cancer research.

On the docket

We have four big fundraising events currently moving forward. Jillian Emmons, our Walk Hero, has done an online Norwex sales party, with her cut of the proceeds going to her Walk. Her friends, some of whom walk with our team and some of whom don’t, have organized similar parties to raise money either to support Jillian’s Walk or their own. If you’d like details, drop me an email and I’ll forward your name to Jillian. Or you can go here and drop her a note yourself.

…a massive zebra herd made of luminaria bags.

Jenaleigh Landers has set August 1 as the date for the Hank Landers Memorial Golf Tournament. Hank was her Dad, who died of NET cancer two years ago this month. The tournament will take place at the Bradford Country Club in Haverhill, MA. Tee time is 1 p.m. You can learn more about the tournament at https://www.facebook.com/events/980650735291973/

Players and sponsors

August 27 is the Walking with Jane Miniature Golf Open at Caddy Shack in Dartmouth, MA. I’ll put up a Facebook event page for this later in the week. Tournament entry fees are $10 for adults and $6 for children 12 and under. Caddy Shack is donating both the use of the course and whatever non-tournament players spend with them during the time of the tournament.

We have four big fundraising events currently…

If you know of a business that would like to sponsor our official NETwalkers Alliance team t-shirts for the day of the Marathon Walk, those are available again this year. Bronze sponsors pay $100 to get their business’s name on the back of the shirt. For $250 they get their business logo on the back of the shirt. For $500 or more, they get their logo on the front of the shirt. We already have three for the front of the shirt, one of which is a holdover from last year.

Bits and pieces

I must have all sponsor materials by August 15 so that I can get the shirt design finished and to the printer in time to get the shirts out before Walk Day.

If you know of a business…

Finally, a generous donor has offered to match all donations made to my Marathon Walk through June 30 at midnight. There is still about $400 left in that matching fund, so if you have not yet donated, this would be a good time to do so.

June has been a hectic month–and July is looking pretty busy as well. If we are going to kill this thing, every month needs to have plenty of effort put into it, whether by researchers or those of us trying to fund that research.